Alzheimer's Disease and Related Dementias - AZDirectCare.org

128 Pages·2008·0.78 MB·English

A ’ D
LZHEIMER S ISEASE
D M
AND OTHER EMENTIAS ODULE

A training program
for caregivers, personal
attendants and direct
support professionals.

The Arizona Direct Care Curriculum Project
June 2008

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Principles of Caregiving, Alzheimer’s Disease and Other Dementias Module, 6/08
Acknowledgments

The Principles of Caregiving training manuals were created with guidance from the
Arizona Direct Care Workforce Committee (formerly the Core Curriculum and
Expansion Committee) to help establish a high-quality training program for direct care
and direct support professionals in Arizona. Many individuals and agencies were
involved, but special gratitude goes to the Arizona Bridge for Independent Living (ABIL),
AIRES, the Foundation for Senior Living, the Children and Family Alliance, the
Alzheimer’s Association – Desert Southwest Chapter, and Phoenix College. The
artwork for the cover was designed by Gateway Community College. For more
information about the curriculum project, please visit
http://www.azdes.gov/aaa/directcare.asp.

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The Direct Care Curriculum Project is a partnership between the Arizona Department of
Economic Security, the Arizona Department of Health Services, the Arizona Health
Care Cost Containment System, the Governor’s Council on Developmental Disabilities,
and the Core Curriculum and Expansion Committee.

The opinions expressed in this material do not represent the official positions of these
agencies.

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Principles of Caregiving, Alzheimer’s Disease and Other Dementias Module, 6/08
Principles of Caregiving includes the following modules. Each module consists of a
trainer manual, a student manual, and a slide presentation.

Caregiving Fundamentals
Aging and Physical Disabilities Module
Developmental Disabilities Module
Alzheimer’s Disease and Other Dementias Module

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Arizona Direct Care Curriculum Project,
Principles of Caregiving.

This material was created for educational purposes by the Arizona Direct Care
Curriculum Project. For more information about the curriculum project, please visit
http://www.azdes.gov/aaa/directcare.asp.

Cover design and artwork created by Gateway Community College, a Maricopa
Community College. All rights to the logo and cover design are reserved by the
Arizona Direct Care Curriculum Project for exclusive use with the Principles of
Caregiving materials and classes.

Current Printing: June 2008

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Principles of Caregiving, Alzheimer’s Disease and Other Dementias Module, 6/08
Preface to the Principles of Caregiving

The Arizona Direct Care Curriculum Project:

The Development of Standardized
Direct Care Professional Training in Arizona

The need for home and community-based caregiving is one of the most compelling issues of
our time. It will affect nearly every family in America. In order to be ready to meet the
increasing demand for home and community-based services, Arizona must develop a capable
and compassionate workforce of caregivers. We are clearly moving in that direction with the
support of Arizona’s policy makers and service providers. We are preparing to meet these
challenges by creating tools and resources to assist in developing an adequate supply of
qualified and well-trained long-term care workers, including caregivers, personal attendants,
and direct support professionals.

In 2002, Arizona passed legislation to increase the wages of these direct care professionals,
thereby recognizing the importance of the long-term care workforce. At the same time, the
Senate Ad Hoc Committee on Caregiver Wages and Workforce Development was established.
The purpose of the Committee was to define critical policy concerns and emerging issues
regarding long-term care and caregivers. In addition, the committee was to develop cost-
effective strategies to promote and encourage caregiver workforce development that would
support and strengthen family and informal caregiving as a key component of long-term care.

In 2004, Governor Janet Napolitano appointed the Citizens Work Group on the Long-Term Care
Workforce (CWG) to further develop and provide recommendations for improving the quality of
the long-term care workforce. The CWG identified guiding principles for the development of an
improved and enhanced direct care workforce, to include: 1) promotion of person-centered care
practices, 2) recognition of the value of the direct care worker, and 3) assurance of access to
care and quality of care in long-term care settings.

In 2005, the CWG laid out ten recommendations. One called for the implementation of a
standardized, uniform, and universal training curriculum for the direct care workforce.
Complimentary specialty modules would include skills and knowledge to work with the elderly
and individuals with physical disabilities, developmental disabilities, dementia and Alzheimer’s
Disease, and behavioral health disease.

With the continued support of Governor Napolitano, the CWG is currently serving as the Core
Curriculum and Expansion Committee of the Interagency Council on Long-Term Care (IACLTC)
to further develop and disseminate the core curriculum and modules statewide. The committee
will oversee the development of additional modules, create a quality assurance component,
monitor implementation throughout Arizona and continue to develop additional
recommendations to ensure success of the direct care professional and the quality of care in
our communities.

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Principles of Caregiving, Alzheimer’s Disease and Other Dementias Module, 6/08
Special thanks to Dick White of Valley Interfaith Project and Kathleen Collins Pagels of the
Arizona Health Care Association, who have diligently co-chaired these work groups. In addition,
we owe special thanks to the agencies that developed the training curriculum, including Arizona
Bridge to Independent Living (ABIL), Foundation for Senior Living (FSL), AIRES, the Children
and Family Alliance, the Alzheimer’s Association – Desert Southwest Chapter, and Phoenix
College. Funding for the Direct Care Curriculum Project was provided by the Department of
Economic Security, Division of Aging and Adult Services, and the Governor’s Council on
Developmental Disabilities.

Introduction to the

Alzheimer’s Disease and Dementia Module

For this module: “Principals of Caregiving, Alzheimer’s Disease and Other Dementias”
representatives of residential care, home and community based care, experts in the fields of
communication, behavior, and activities contributed significantly. These individuals, who
volunteer for the Alzheimer’s Association and work on the front line of caregiving every day,
represent the latest thinking in “best practice” care and treatment of individuals with
Alzheimer’s disease and other forms of dementia. The curriculum was developed with the
understanding and appreciation of the growing sense of urgency in making it available to as
many caregivers, including both professionals and volunteers, in the shortest period of time
possible. Further, it was the understanding of the contributing authors that its development was
a response to the growing need for this information to be shared with the existing aging care
network as well as to train new caregivers as part of the Arizona Direct Care Curriculum Project.
It is the hope and expectation of the contributors to this document that it will be used for the
purposes intended. Those purposes are to: (1) improve the quality of life for those under our
care with Alzheimer’s disease and other forms of dementia, and (2) reduce caregiving induced
stress and increase job satisfaction for both professional and volunteer caregivers. The content
of this curriculum should be viewed in its entirety. The concepts and information included in
the curriculum are interrelated and serve as a web of knowledge and skill to ensure the highest
quality of life possible for those for whom it was written. To omit or weaken any of the strands
of the web may cause the curriculum to loose its impact and the care net to loose its strength in
achieving its intended purposes.

Alzheimer’s Association, Desert Southwest Chapter
Central Arizona Region
Phoenix, Arizona
December 2007

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Principles of Caregiving
Alzheimer’s Disease and Other Dementias

Table of Contents Page

WELCOME CAREGIVERS………………………………………………………………………………………..9
SECTION I — DEFINING DEMENTIA AND ALZHEIMER’S DISEASE ................11 
A. Symptoms of Dementia............................................................................... 12 
B. Causes of Dementia.................................................................................... 13 
C. Alzheimer’s Disease.................................................................................... 14 
D. Vascular or Multi-Infarct Dementia............................................................... 15
E. Fronto-temporal Dementias/Pick’s Disease.................................................... 15 
F. Lewy Body Dementia................................................................................... 16 
G. Less Common Progressive Forms of Dementia.............................................. 16 
H. Stages of Alzheimer’s Disease...................................................................... 17 
I. Associated Problems with Alzheimer’s Disease............................................. 18
J. Treatment of Alzheimer’s Disease and Associated Problem ............................ 20
Section I Questions..................................................................................... 22
SECTION II – PHILOSOPHY AND VALUE OF DEMENTIA CARE.......................23 
A. An Alzheimer’s Disease Bill of Rights ............................................................ 24 
B. Establishing the Dementia Care Culture........................................................ 25 
C. Define and Refine Terms and Language....................................................... 26
D The Maintenance and Enhancement of Personhood........................................ 27
E. Putting Yourself Inside Dementia................................................................. 29
F. Rules for Visiting the Culture of Dementia..................................................... 30
G.. Considering Cultural Diversity in Care.......................................................... 31
H. Person Directed Environments..................................................................... 33
I. Caring for Caregivers.................................................................................. 35
J. Stress Management..................................................................................... 36
K. Practical Strategies to Reduce Caregiver Stress and
Enhance Wellbeing.................................................................................... 39
L. Working Effectively with your Care Facility Colleagues.................................... 41
M. Working with Families ............................................................................... 42
N. Stages of the Family Experience.................................................................. 43
O. Coping Strategies for Families and Caregivers............................................... 45
P. Case Studies .............................................................................................. 47
Section II Questions.................................................................................. 49
SECTION III — COMMUNICATING WITH THE PERSON WITH DEMENTIA.....51
A. Techniques For Verbal and Non-Verbal Communication.................................. 53
B. Skill Building – Verbal and Non-Verbal Communication

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Techniques............................................................................................... 55
C. Communicating with Peers for More Effective Dementia Care......................... 57
D. Concept for Building a Strong Caregiver TEAM.............................................. 58
Section III Questions................................................................................. 59
SECTION IV —DEALING WITH DEMENTIA RELATED BEHAVIORS.................61
A. Why Behaviors Occurs................................................................................. 62  
B. The Dementia Care Philosophy as it Applies to Behavior ................................ 64 
C. Key Principles............................................................................................. 64
D. Prevention.......................................................................................................................65
E. Interventions.............................................................................................. 66 
F. Dealing with Common Behaviors.................................................................. 69 
G. Medications in Treating Dementia Related Behaviors..................................... 70
H. Difficult Behavior Practice Situations ............................................................ 73 
Section IV Questions................................................................................. 74
SECTION V —ACTIVITIES OF DAILY LIVING (ADLs) .....................................77
A. Effects of Dementia on ADLs...................................................................... 77
B. Other Problems that Affect Completion of ADLs............................................. 78  
C. Method of Reducing Risk............................................................................. 79 
D. How to show Dignity and Respect to Persons
with Dementia While Assisting with ADLs..................................................... 80
E. Caregiver Traits of “Knack”.......................................................................... 81 
F. How to Show Dignity and Respect................................................................ 84 
G. Methods of Enhancing Independence and Preventing an
Individual with Dementia from Losing Abilities............................................. 85
H. Eating and Nutrition.................................................................................... 86
I. Bathing ...................................................................................................... 93
J. Dressing and Grooming ............................................................................... 93
K. Toileting .................................................................................................... 97
Section V Questions...................................................................................101
SECTION VI — ACTIVITIES..........................................................................103
A. Types of Activities......................................................................................104
B. Benefits of Activities...................................................................................105
C. Guidelines for Choosing Activities................................................................106
D. How to Determine Appropriate Activities .....................................................106
E. Activities for Different Stages of Dementia...................................................109
F. Activity: Planning for Failure Free Activities.................................................111
Section VI Questions..................................................................................112
SECTION VII — LEGAL AND FINANCIAL PLANNING FOR FAMILIES............113
A. Power of Attorney and Surrogates...............................................................113
B. Guardianships ...........................................................................................117
C. Conservatorships.......................................................................................119
D. Medicare vs. Medicaid (ALTCS)...................................................................122
Glossary ..................................................................................................127

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Welcome Caregivers!

We are glad that you have chosen to participate in a unique training program for
working with a special group of people – those individuals suffering from Alzheimer’s
Disease and related dementia.
You will have ample opportunity to learn about the nature of dementia, how to provide
a safe and comfortable environment, handle difficult behaviors and provide support to
the families.
This course is 12 hours long, divided into seven main sections:

(cid:131) Defining Dementia and Alzheimer's Disease
(cid:131) The Philosophy & Values in Dementia Care
(cid:131) Communicating with the Person with Dementia
(cid:131) Dealing with Dementia-Related Behaviors
(cid:131) Activities of Daily Living
(cid:131) Activities
(cid:131) Legal and Financial Planning for Families

Your instructors are chosen because of their skill, knowledge and experience in the care
of persons with dementia. If you have any questions about anything you will read in
this book or hear in your class, ask your instructors. They are a valuable resource.

We hope that you will enjoy the opportunity to apply what you learn in this course to
your daily experience as a caregiver.

A Note on the Principles of Caregiving Curriculum
Principles of Caregiving is a training curriculum that consists of Fundamentals and three
modules. The Fundamentals piece contains the material most likely needed by most
direct care and direct support professionals, regardless of the service setting. There are
three modules that build on the Fundamentals: Aging and Physical Disabilities,
Developmental Disabilities, and Alzheimer’s Disease and Other Dementias.

When this curriculum was created, it was the intention that direct care workers would
complete the Fundamentals and one additional module. Depending on the needs of
your employer and the persons needing care, you may not need all the knowledge and
skills presented in this curriculum. However, we would encourage you to study the
whole program. The Principles of Caregiving curriculum is designed to provide a well
rounded introduction to caregiving and direct supports, and you will be prepared to
work in a variety of settings.

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